Trying to find Joy in the Everyday Moments

May 15, 2014

International Hyperemesis Gravidarum Awareness Day 2014 - What It Means To Me

Morning all.

After the flurry of the past couple of weeks (both with hospital appointments and work) I find myself sitting here on the morning of 15th May, a date I have been working towards all year, realising I have not even thought about what I would write today. And that surprises me, because for all the work I do in the HG World and all the times I think about it, I somehow seem to have been avoiding writing a post like this. What does HG (Hyperemesis Gravidarum) mean to me?

I actually and honestly do not know where to start with this one. There is no simple answer. In many ways HG was the unrelenting thief that stole away my health during pregnancy, took the joy of carrying new life away from us, and even wiped away a lot of the joy of becoming new parents when depression hit. And that thief continues to work today as it steals the dream of having more children away from me. But HG also gave me an awful lot...

It gave me greater compassion for others, realising that pregnancy isn't the easy-going, exciting time you hope it is for a lot people. Whether it's HG or some other complication, pregnancy can be tough and we all need support to get through that.

It also gave me even deeper determination to create change. I've always felt a strong desire to fight for those who need it, but without the absolute horror that was my HG experience I don't think I would ever have thrown myself quite so passionately and completely into anything. When I look back over the past 2.5 years since having Little Man I cannot believe just how much I have done. I threw myself almost with wild abandon into a world which needed strong voices to stand up for those who, like I myself had been during pregnancy, were unable to fight for themselves.

I have written a book. This is nothing new, pretty much everyone who has ever known me well has expected I would write a book one day. But this was not the sort of book I expected to write at all. Prior to my pregnancy I started writing a novel... that was the sort of book I thought I would write. Not an extensive guide to a medical condition. I mean, I don't even have a medical background. It's been tough, I've had to learn an awful lot and have spent hours pouring over research and learning what it all means. And I very nearly gave up several times. But I didn't and thanks to the wonderful passion of my co-author we got there. Our book is currently with the publisher and should be out later this year!

I have also organised two handmade auctions to raise money for the charity Pregnancy Sickness Support (PSS). The first came out of the sudden idea that everybody loves to receive a handmade gift, so why not run an auction and raise money for the charity I loved and wished had been around when I was pregnant. That first auction raised just over £300 for PSS, whereas this year's is still live and will be until Sunday 18th May 2014 at 10am, so why not pop over and see what goodies we have. Some of them are items I made as part of my Nine Months Of crochet challenge - another endeavour I'd have never undertaken without knowing just how hard HG is and how worth every minute the effort was.

And finally I am now the Volunteer Coordinator for PSS. I cannot tell you how much of a privilege it is to go to work every day and work with over 100 volunteers around the country who are as passionate as I am about supporting women in their darkest hours and creating change for the women who are yet to face this journey. I speak to women on a daily basis who are in the throes of HG and I am reminded constantly of how harrowing that experience is and I know, without a doubt, that no matter how overwhelming my work is (and it really is a lot of the time!) it is worth it. Because at the end of the day, we are offering the support and information women and their families need to survive a HG pregnancy and meet their babies at the end of nine very long and hard months.

I know that HG isn't really what brought Little Man to me. I would have had just as beautiful and gorgeous a baby boy had I sailed through pregnancy without any kind of sickness at all. But because it was such a hard-won battle I am constantly aware of just how very lucky we were that I didn't give up, that I didn't allow the terrible medical care I received to push me beyond my limits, that I didn't find myself making the awful decision that some women with HG feel that have no choice but to make and end the pregnancy. I'll never forget that.

But for all that, my heart still breaks at what HG has stolen from us. That awful thief which made my pregnancy a living hell and which has left us feeling like there is no way we could ever go through it again, even with the extra support that PSS provides. I think back to my pregnancy and wonder how different it might have been were the support network and website PSS has today available in 2011. Would I have allowed myself to get to my 5th month before getting any kind of helpful medical support? Would I and my husband have felt so utterly alone and terrified? Would we have made the painful decision to never have another child of our own?

I'm not saying the support makes HG easy. It does not. But it can make it easier and that is something I will work tirelessly for until the day when HG is taken seriously and women are treated promptly and effectively without having to battle for it. I'll fight so that no other woman has to make the decision to never go through the happy times of pregnancty - the joy of a positive result, the excitement of the first scan, the wonder of the very first kick, the fun in choosing a name, and the overwhelming emotion that comes with holding your baby in your arms for the very first time.

Writing that makes me cry, because quite frankly I want nothing more than to be able to do that all again. But I can't. Sometimes I am perfectly okay with that and other times it breaks me apart. It is like a grief that sneaks up on you when you're least expecting it. And I know so many other women feel that same grief. And I'll fight for them too.

Every woman's experience of HG is different. Some do it once, some do it multiple times. Some are in and out of hospital, some never get admitted even once. Some receive excellent care, others are treated in an appalling way. But one thing remains true throughout all of this... HG brings us together. Once you have experienced it you know the depths of another sufferer's heart and that brings us together in a wonderful community of support and acceptance. And that is something HG gives instead of taking away. And that's what I want to end this post with.

For the second year running, PSS has created an awareness video, sharing the photos of HG sufferers and survivors. And for the second year running it has moved me to tears. Please consider watching it as it shows so much more than I can possibly do in my words alone. The video below is only viewable on the computer, so if you are reading this on a mobile then please click this link to view the mobile version.

Thank you all for reading. If you want to know more about the work of PSS and how much is being done today to raise funds and awareness, then please do their blog at www.ninemonthsof.com

Want to read more?

There are some amazing bloggers out there who are writing about their own experiences of HG (or severe sickness that hasn't quite been diagnosed as HG). If you don't know where to start, here's a list of some of my favourites:

Adventures of Adam - Emma is a trustee for PSS and writes a blog about fun activities she does with her son, Adam. She has a whole host of HG Friendly Activities - things you can do with your kids that are easy to set up, take very little adult input, and are unlikely to set off triggers such as smells or movement. Her blog has been shortlisted for an award in the BiBs - you can vote for it in the Fresh Voice Category here. Emma wrote about her own HG experience here.

Diary of a Charity Chick - Susie is another trustee for PSS and writes a blog about her charity work not just for PSS but also in other areas. Susie is a whirlwind of activity and never seems to stop, so it is great to see all that she is achieving! She has written a post today which you can read here.

Me, The Man and The Baby - another Emma, this time an award winning blogger who is once again shortlisted for another award for her posts about pregnancy! I came across Emma's blog on Twitter and have followed her journey since. She has written about HG today as well and you can read that post here.

Mummy Whiskers - Katrina is an amazingly committed PSS volunteer and whilst I knew her before I became the Volunteer Coordinator my respect for her has grown so much since I took on the role and discovered just how much passion, energy and enthusiasm she has for the charity and the women we support. Katrina started her blog last year and it has gone from strength to strength ever since and she has written an incredibly thorough round-up post today which you can read here.

Ruby + Lottie - Kimberley is another PSS volunteer who is also a blogger (seems there are a few of us!) and she shared her HG experience with the media (newspapers, magazines and radio) as well as on her blog. She has written a post about it today which you can read here.

Spewing Mummy - Caitlin is, without a doubt, the most enthusiastic advocate for women with HG I have ever come across. She helped redesign the PSS website, started the support network, runs a blog (which has been shortlisted for not one but two blog awards this year! You can still vote for her in the Commentary and Campaigns category in the BiBs here) and helped me write the book about HG. She is, and always has been, my inspiration and I am constantly amazed by how much she has achieved and continues to achieve for women with HG. I am so proud of her and would recommend you follow her blog if you're currently suffering from HG.

21 Comments

Lovely post Amanda :) It's so good to be spreading awareness of HG on a day like today. I think there are so many people who just do not know about it and presume anyone who suffers more than a little 'morning sickness' is being pathetic. As a HG baby myself, and someone who also suffered a fair amount of pregnancy sickness (probably not quite HG), I too will help to spread the word today! x

Sounds like you really went through it whilst you were pregnant. It is not something I am really aware of (thankfully) and so it is great you are raising awareness of the condition. Keep up the good work!

I was so lucky with my pregnancies, but know others who had a dreadful time with sickness - and theirs wasn't even HG. I really feel for you, and found it so interesting to read your post. It's great that you're raising awareness of this awful disorder.

Thank you for highlighting the difficulties that so many women suffer and that they need help, support and love. It makes me quite angry that the media present a view of pregnancy as a beautiful, glowing and perfectly natural process. For so many it is exhausting and women should be treated as having a serious medical condition rather than being left to 'get on with it'. Why does our society treat women like this. Pregnancy is very hard, it is an emotional and medical roller coaster and if you are trying to hold down a job as well life can be almost impossible to get through. I am so glad that you got through it and that you have your beautiful child. All the work that you do for other women who are suffering is amazing and I think you are truly wonderful x

I've read a few of these HG awareness posts this month and they've certainly enlightened me as to what you've all been through. I thought morning sickness was bad but this is above and beyond. Wow. Great to be raising awareness and providing a support network for people who are going through this. It must be very isolating. Well done for being committed to the cause.

Great post. I have never written much about my HG as it's not something I want to revisit at the moment, if ever, and I find it difficult to read too much about it. BUT, I am passionate about women with HG getting support, and knowing they are not alone. I felt so reassured finding a forum about it and realising I wasn't going mad, and when I posted on it about my anxiety creeping back and feeling unable to deal with life even though the sickness was under control, I received many lovely messages that kept me going. HG is so isolating, the internet makes such a difference as you are able to learn about your condition and keep up with the outside world. If I wasn't sleeping or puking I was usually scrolling through Twitter and Facebook! Keep up the great work.

I don't know much about the condition and I have to say I'm thankful for that because it sounds absolutely awful. Well done for everything you've achieved since going through that and good luck for the future xx

Oh, I was terrible when I had my son. Couldn't keep anything down, lost oodles of weight, and whoever says it is 'morning' sickness don't know what they are talking about! Went on for 20-odd weeks. All worth it, though :-)